Our
Kids
Zachary Rathwell
Age 5
Currently in Remission
 In the spring of 2004 we found out that our
three-year-old son Zachary had a low level of
Alpha1-antitrypsin - a genetic disorder that can
potentially lead to liver problems in children.
On March 31, 2005 Zachary therefore went to CHEO
for a liver ultrasound. Thankfully, his liver
was fine. However, in doing the ultrasound, an
unexpected and totally unrelated problem was
discovered…Zack had a mass in his pelvis. “I had
a pit in my stomach and feeling something was
wrong when we were asked to wait outside for the
resident radiologist to arrive – but I never
expected a tumor in our healthy, energetic
little boy.” Later that same day, we met with
Dr. Klassen, an oncologist at CHEO and were
given the devastating news that the mass was
indeed a tumor and possibly, neuroblastoma. The
very next day, Zack was admitted for a 24-hour
urine collection, had an MRI, CAT scan, bone
marrow extraction and more blood work. By the
end of that week, Zack had surgery to perform a
biopsy.
 The biopsy results confirmed a diagnosis of
stage 3 neuroblastoma. Thankfully, test results
showed that the tumor had a favorable histology
and was not the aggressive form with N myc-gene
amplification. However, the tumor was 9 cm,
taking up his entire pelvic cavity and pushing
on his bladder. From April-September of 2005
Zachary went through 8 rounds of chemotherapy
over 6 months.
Every three weeks, Zachary was admitted for
three days of chemotherapy. He also visited the
Medical Day Unit 2-3 times per week for blood
work, and dressing changes to his central line.
Over the course of his treatment, Zachary had 3
surgeries, 8 blood transfusions, over 75
needles, 10 MRI’s, 2 CAT scans, 15 MIBG scans, 6
bone scans – 28 overnight stays and well over
100 visits to CHEO. He has visited just about
every department at CHEO (Oncology, Nuclear
Medicine, Radiology, Urology, Neurology,
Audiology, Cardiology, Orthopedics, Speech and
Language, and Nephrology.
Remarkably, Zachary’s tumor was a very rare form
of Neuroblastoma that can mature into a benign
form called Ganglioneuroma. From the outset, he
had a “mixed” tumor that consisted of mature
ganglioneuroma (a benign tumor) and
neuroblastoma. While the chemotherapy did not
shrink his tumor, it did cause it to mature. In
December of 2005, multiple biopsies were
performed. We were overjoyed to learn that all
samples showed only mature, benign
ganglioneuroma. Because of the tumor’s location,
size, his lack of side effects and the surgical
risks, Zachary’s tumor was left untouched.
Today, Zachary is a happy healthy, normal 5 year
old boy who loves to play hockey, soccer, hot
wheels and with his sister Emilie. He is still
followed closely by CHEO, but his long-term
prognosis is excellent. We are so grateful to
the staff at CHEO and thank God every day for
our little boy.
Sadly, the majority of neuroblastoma cases are
aggressive and have metastasized by the time
they are diagnosed. No one knows why some forms
of neuroblastoma can mature or why others
spontaneously regress in children under one year
of age. Before Zachary’s diagnosis, we had never
even heard of Neuroblastoma. While awareness is
increasing, it does not get the funding
required. It remains the third leading form of
childhood cancer, yet it is one of the number
one causes of death. Please help support
research to end this terrible disease.
Steve and Stephanie Rathwell
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